The power of shared experience: Empowering women to face their cancer risk

Caitlin Lopez

Editor’s note: The National Society of Genetic Counselors partners with Bright Pink to provide relevant and accurate information about genetic counseling and testing for breast and ovarian cancer. NSGC has provided input on and endorsed certain educational materials and tools designed by Bright Pink with the goal of empowering young women to be proactive with their breast and ovarian health.

The following article is a part of the National Society of Genetic Counselors’ patient blog post series. Written by real patients, these stories share a glimpse into the sometimes-complicated world of genetics and the role a genetic counselor can play in helping people navigate their healthcare.

Caitlin Lopez

In the spring of 2013, I met with my new OB/GYN for a routine exam, and we discussed my family health history. I’d never really thought about my genetic risk for breast cancer. I knew my maternal grandmother had had breast cancer but hers was the only case in the family. But throughout our discussion, my doctor noted other cancers in my family history including multiple cancers on one side of my family. This revelation suggested there might be genetic mutations in my family, and my doctor suggested I talk with my family about genetic counseling.

After my appointment, my mother agreed to have the same conversation with her healthcare provider, who agreed that we would be good candidates for genetic counseling and testing. My mother underwent genetic testing immediately. When her results came back positive for the BRCA1 mutation, I made the decision to get tested. My results came back positive as well.

After learning I also carry the BRCA1 mutation, I proceeded with genetic counseling. I had no idea what to expect.

My experience with my genetic counselor, Nicole, provided me with timely education and support. No stone was left unturned in her explanations. Together, we mapped my family tree and I began to understand the patterns that exist in families who carry genetic mutations. Nicole distilled a very large amount of information and used terms that I could actually understand. She was extraordinarily helpful when I made the difficult decision to have a double mastectomy to lower my breast cancer risk. We are still in contact and I feel comfort knowing that she is always available if I have questions.

I turned to my incredible husband for support throughout this process. He has supported every decision I’ve made – from actually getting genetic testing done to having the mastectomy. The only thing my husband could not provide me was the comfort and validation that comes from having a shared experience. He was always there to hold my hand, but couldn’t provide the kind of support you get from someone who has walked in your shoes. That’s where Nicole helped yet again by introducing me to Bright Pink.

Nicole directed me to BrightPink.org to learn more about this organization focused on the prevention and early detection of breast and ovarian cancer. I reached out seeking support as a woman at high risk and was matched with a PinkPal® – a peer mentor who had been through similar experiences and was open to answering questions and listening to my decision rationale. I also attended a Bright Pink Outreach Group in New York City and connected with multiple women who were at various stages of managing their own breast and ovarian cancer risk through genetic counseling, testing, risk-reduction and/or surveillance.

This solid support system made all the difference in my experience. I no longer felt alone with my decisions and had people to talk to – Nicole, my husband, and the Bright Pink community – every step of the way.

Further into this process, I knew that I was going to be okay and at that point I was motivated to pay it forward to other women. I discovered Bright Pink’s Brighten Up® Educational Workshop and went through Bright Pink University to become a certified Education Ambassador, a volunteer role through which I deliver 30-minute breast and ovarian health presentations to gatherings of women (and men!) around the country.

We all have the power to be proactive with our health, but how can we be proactive if we don't know what to do? This is where I come into play! Through the Brighten Up Educational Workshop, Bright Pink teaches everything from signs and symptoms of breast and ovarian cancer, to how lifestyle affects risk, how to collect a family history, and how to advocate for the best preventive care at your annual doctor’s visit. Yes, some women may have heard about breast self-awareness, but do they always know what to look for? They may have stomach discomfort for a few weeks, without knowing that abdominal pain is a symptom of ovarian cancer. Through this workshop, we’re helping people move from awareness to action.

I love dedicating my free time to help women to discover their true potential to be advocates for their own health by teaching risk reduction tactics and how to detect breast and ovarian cancer at early, non-life-threatening stages.

I want women to know how to be proactive each day so that they are able to live their lives to the fullest and not have to worry about cancer. Help me accomplish this goal by inviting me or another Bright Pink ambassador to your organization to present a Brighten Up Educational Workshop. Together, we can empower women to be their own best health advocates.

For more information on hosting a Brighten Up workshop or becoming an education ambassador, contact BrightenUp@BrightPink.org.

If you feel you could benefit from meeting with a genetic counselor, find one in your area here.

This month, NSGC President Amy Sturm shares an update of the work the NSGC Board of Directors, Committees and Task Forces are doing to ensure genetic counselors are leading the integration of genetics...